Our dear cousin from Canada, Roshlind Kate Mance, was recently diagnosed with 2 rare diseases – Aplastic Anemia which is a rare blood disease and Paroxysmal Nocturnal Hemoglobinuria (PNH), which is a rare disease of the bone marrow.What is it?
Aplastic anemia happens when your bone marrow fails to produce enough blood cells and your own immune system attacks and kills your bone marrow stem cells which are required for blood cell production. When they are killed, your blood count falls, often to very low levels, which in return causes fatigue and tiredness, bleeding and bruising and increases the risk for infections. PNH causes red blood cells to break down sooner than they should and this early destruction can lead to symptoms and complications that range from minimal to severe which can include leukemia, thrombosis and strokes. PNH is so rare that it only affects 1 person per million of the population.Is there Treatment?
Since being discharged from the hospital, Rosh goes to the hospital twice a week to receive platelet and blood transfusions to keep her blood level as close to normal as possible. She will also need 2 separate treatments for each disease. Unfortunately, her treatment for PNH was declined funding from the government of Alberta due to the ridiculous cost of $500,000 a year. (This high cost and lack of coverage from the government is because PNH is so rare and not many people require it.)
Roshlind’s only chance at returning to a normal life and curing both diseases is to undergo a stem cell transplant. Siblings are a best potential match for a transplant at a 20% chance, and parents at 5%. We recently found out that Roshlind’s parents nor sisters were a match for her.Finding a Match!
Unfortunately, there is very limited people within the Asian community registered to become donors. Roshlind is of Filipino descent, and her only chance of finding a match from a donor is within the Asian population. Only 1% of the One Match Stem & Marrow network is made up of Filipino descent. This makes it very difficult to find a match for Roshlind and others like her.Our Campaign
So to increase her chances at finding a match, our family has decided to do 3 donor drives in 3 separate Canadian cities. All proceeds raised will go towards resources in finding roshlind a match as well as raising awareness for all ethnicities who are underrepresented in the One Match database. Resources include: posters, pamphlets, venues, chair and table rentals, for all 3 cities. Any unused money will be donated to charities who help children like Roshlind everyday.
**PLEASE NOTE AS THIS CAMPAIGN WAS SET UP IN AMERICA, ALL DONATIONS WILL BE MADE IN USD **Follow Roshlind's Journey and Information on our Donor Drives
https://www.match4roshlind.com/ More Ways to Help!
Sign-up to be a stem cell donor in Canadahttps://blood.ca/en/stem-cell/onematch-information-new-registrants
Sign-up to be a stem cell donor in the USA https://join.bethematch.org/
Sign-up to be a stem cell donor in the UKhttps://www.dkms.org.uk/en/register-now
Make a donation to Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) http://www.aamac.ca/e/
Make a donation to Kids Cancer Care http://www.kidscancercare.ab.ca
Make a donation to Canadian Blood Services https://blood.ca/en/fundraising
Thank you all so much for your kind generosity and support.
With so much love,